In our environmentally conscious world the media seem to be increasingly highlighting claims that herbal remedies or alternative treatments alleviate or cure a variety of conditions. It is not surprising then that MGA is frequently asked for its opinion on the subject. Unfortunately data from properly controlled trials needed to evaluate such treatments is rarely forthcoming.
An article recently published by Dr. Sarah Yates, Director of Research Funding at Strangeways Research Laboratories highlights a number of difficulties researchers have with claims made for various alternative treatments and gives a common-sense guide to how we should proceed in the light of this lack of evidence.
The difficulty of taking individual successes at face value is firstly that the placebo effect is well recognised, i.e. if people believe something is doing them good, even if it is a coloured sugar solution, then the chances are that they will find it of benefit and if asked will say they perceive an improvement. This psychological benefit should not be dismissed, if it is of help then it is of value, the point is virtually anything can have this effect so one definition of a useful treatment is something which will be more effective than a placebo. To check this out when establishing the value of a treatment it is important to run a double blind trial, i.e. neither the patient nor the individual assessing the effects of the treatment should know whether they have been given a 'dummy' or the real thing. If patients getting the real thing consistently do better than those getting the 'dummy' then it is a good sign.
The word 'consistently' brings me to the second point. Many diseases are quite variable in their progression, which adds another difficulty, i.e. natural variation in muscle strength between individuals. This means when evaluating whether a treatment is successful it is important to study enough patients to be sure that chance differences between the 'dummy' and 'treatment' groups are avoided.
To make life easier it is also important to minimise potential differences by starting off with groups which are composed of individuals of roughly the same age, stage of disease, and (it may seem obvious) who have the same disease. It is crucial to make proper clinical measurements of those functions, e.g. muscle strength, which are predicted to benefit from treatment; subjective judgement can often be misleading.
I hope this helps to explain why, before any 'alternative' or indeed conventional' treatment is claimed to be beneficial and is made generally available, one should check that 3 golden rules apply:
"Well, I understand all that", you may reply, "but if we want to go ahead with an alternative remedy, on the grounds that anything is better than nothing and it might just work in this particular case, even if it cannot be scientifically proven to be of use to everyone, is there any harm in it?"
The first question is - Can you be reasonably sure it is safe? Give this careful consideration; many people think that herbal treatments are 'natural' and 'mild' and cannot do any harm. This is not necessarily the case. There are many 'natural' poisonous plants and many potent drugs are derived from plants. Are you sure what is in the treatment provided? There have been cases where generally available herbal remedies have been withdrawn from use because constituents cause nasty side effects such as kidney damage. This is not intended to cause panic. Most herbal remedies are, as far as we know, innocuous, but do consider what it is you are being offered. It goes without saying that the advice applies to any proposed treatment, particularly if offered by anyone other than a fully qualified medical practitioner.
The second question is - Is it expensive and can you afford it? The chances of an unproved remedy working are, based on past history, minimal, therefore it is probably not worth the gamble if you have to make a substantial investment. What about trying a modified diet?
A well balanced diet which does not result in excessive weight gain has to be better than one which has a poor nutritional content. Individuals with neuromuscular disease are no different from anyone else in this respect; if a good diet maintains good general health then it is an excellent platform to help deal with the impact of other problems, be it flu or a muscle disorder. On the other hand fad diets should be avoided. An intake restricted to pineapples and grapes, dry Weetabix or whatever, is bad news for anyone - I have seen perfectly healthy individuals crumble under such a regime!
The Association does its best to ensure that the information contained in this leaflet is complete and up to date at the time of publication, but cannot accept any legal liability whether for any inaccuracy or otherwise.
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